Calls for wider cardiac screening as new research confirms it’s not just athletes and “sporty” young people at risk

Published papers conclude that sudden arrhythmic death (SADS) is more common ‘at rest’ or whilst sleeping than during excessive exercise

Researchers funded by the charity, Cardiac Risk in the Young (CRY) have today [16 December 2014] published new research in the journal, “Circulation: Arrhythmia & Electrophysiology”1 highlighting that more than 80% of cases of young sudden arrhythmic death (SADS) between the ages of 18 and 35 occur during sleep or at rest – a much higher proportion than those who die playing sport at either an elite or grass roots level.

Whilst physical activity – particularly endurance sports such as rowing, rugby, football and long distance running – can exacerbate an existing, undiagnosed condition (particularly those affecting the structure of the heart muscle2) – these latest findings cast further light on the need for greater accessibility to cardiac screening among the general population, aged between 14- 35 to identity heart rhythm conditions that rarely display symptoms.

High profile cases, such as the collapse of Bolton midfielder Fabrice Muamba and the tragic, sudden deaths of numerous aspiring athletes – have focused the eyes of parents, teachers and the sporting community on the ‘risks’ of sport. This has led to increased pressure on the need for mandatory screening and the placement of defibrillators in sports grounds, gyms and public places.

Indeed, just last month, CRY launched a hard-hitting new film (tracking the final few minutes before the sudden collapse of a teenage rugby player on the pitch) highlighting the need for greater awareness of cardiac screening in grass-roots sports.

However, this new, comprehensive research – believed to be the largest ever studied cohort of cases of young sudden arrhythmic death – it set to challenge current thinking around the circumstances of many fatal collapses. It also underlines the importance of preventative, expert screening due to the fact that many incidences of sudden arrhythmic death are unlikely to occur in a public places and therefore lifesaving equipment such as AEDs are unlikely to be available.

The research was led Dr Greg Mellor, a CRY-funded Research Fellow based at the CRY Centre for Inherited Cardiac Conditions and Sports Cardiology, St George’s Hospital, London.

The study – which analysed 967 hearts, from 2156 referrals to the CRY Centre for Cardiac Pathology over a period of 16 years – also confirmed that in up to 90% of victims, there were no preceding symptoms or recognised risk factors.

Cases where “adrenaline surges” such as exercise or stress were believed to be contributory factors (16%), were more likely to be males and under the age of 18.

The findings also showed that in 7.6% of these cases of young sudden cardiac death, epilepsy had previously been identified – highlighting the potential for misdiagnosis of apparent seizures as epilepsy (neurological) rather than fainting or syncope (cardiac).

Every week in the UK, 12 seemingly fit and healthy young people under the age of 35 die from sudden cardiac death – and of these, many cases will have been caused by problems with the “electrical wiring” of the heart, leading to sudden and fatal arrhythmias. In most other cases, abnormalities to the structure or thickness of the heart muscle will have been the cause of death – although these cases were not investigated as part of this study.

In order to understand the cause of these tragic events – and to exclude genetic conditions, that could lead to further deaths in family members if not treated – expert cardiac pathology is required.

Where the structure of the heart appears to be normal it becomes extremely hard for coroners to record an accurate cause of death or to ascertain the ‘reasons’ behind a sudden and incomprehensible death in a seemingly healthy young person. Further, specialist investigations will usually point to Sudden Arrhythmic Death Syndrome (SADS) – a fatal and previously unidentified fault in the heart’s electrical rhythm. Known conditions that can cause this include Brugada syndrome and Long QT syndromes. Both can be ‘picked up’ using a simple and non-invasive ECG (electrocardiogram), leading onto further investigations if necessary.

Dr Mellor says; “Young sudden cardiac death – whatever the circumstance – has a devastating effect on families and entire communities and our team of researchers are committed to improving the overall understanding of why these seemingly inexplicable deaths occur and ultimately, how they might be prevented. It is only with a greater knowledge of the causes, such as genetic links or other external factors, that we will be able to develop robust, evidence-based advice for young people.

“Whilst this study shows obvious signs are rare, it is vital that children and adolescents seek medical advice from their GP if they experience symptoms such as breathlessness, palpitations and fainting.

“However, for other young people and parents seeking reassurance – whether involved in regular sport or not – we do have an internationally recognised screening programme, that can identify the vast majority of these cardiac abnormalities.”

CRY’s acclaimed screening programme, which was first launched in 1995, now tests around 15,000 young people every year.

It also forms a vital part of CRY’s wider research programme that is building on understanding of the incidence of cardiac conditions in young people and informing national policy on best practice to minimise the incidence and impact of young sudden death.

Dr Steven Cox, Director of Screening at Cardiac Risk in the Young concludes; “Over the past 20 years, CRY has supported many hundreds of families who have come to us for help, advice and often, seeking answers, in the tragic aftermath of the loss of young family member or friend. Of those many calls we receive, the circumstances of death will vary. Yes, some will have occurred in a public place, commonly on a sports field or during training but many will have occurred in the home, where a parent has gone to wake a “sleeping” child or teenager; the alarm has been raised when someone has not answered the doorbell or ‘phone; or a young, “fit” person is simply found slumped in front of the TV. The shock and disbelief experienced by those left behind is indescribable and it is little comfort to them that had the collapse occurred in a public place, then a defibrillator or trained first aider may have helped them.

“What this research makes clear is that whilst there is still much work to be done in understanding the exact causes and triggers of young sudden cardiac death, it is vital for people to have a better understanding of their own, personal risk. We are not here to create panic or a generation of “worried well” – but what we do want to see is greater access to screening for those who want it, better, standardised reporting among coroners and detailed and accurate information recorded at the time of sudden and unexplained deaths.”

ENDS

For more information about the published article in ‘Circulation: Arrhythmia & Electrophysiology’ or to request an interview with Dr Mellor, Professor Sanjay Sharma, Professor Mary Sheppard or Dr Steve Cox, please call Jo Hudson in the CRY Press Office on 020 7112 4905 / 0770 948 7959: jo.hudson@trinitypr/co.ukwww.c-r-y.org.uk / www.testmyheart.orgFamilies who have been affected by young sudden cardiac are also available for interview

Notes to editors:

1 Circulation: Arrhythmia & Electrophysiology’ 16.122014: “Clinical Characteristics and Circumstances of Death in the Sudden Arrhythmic Death Syndrome2 For example, HCM (hypertrophic cardiomyopathy) or ARVC (arrhythmogenic right ventricular cardiomyopathy)

• CRY provides screening services for a number of professional sporting bodies including the English Institute of Sport, the RFU, RFL, LTA, a number of FA teams including Manchester City, and the vast majority of the Olympic Athletes (GB Rowing, GB Cycling, GB Swimming, GB Diving, UK Athletics).

• CRY was founded in May 1995. As well as campaigning and lobbying and the provision of its subsidised cardiac screening programme for young people (35 and under), the charity also provides counselling support to bereaved families and young individuals who may be diagnosed.

• Sudden Cardiac Death (SCD) is an umbrella term for a number of different heart conditions that affect fit and healthy people which, if not treated can result in a dramatic and or / spontaneous death. In about one in 20 cases of sudden cardiac death, no recognised cause can be found – even after post-mortem. This is then called Sudden Arrhythmic Death Syndrome (SADS).

• CRY’s screening programme is overseen by Professor Sanjay Sharma, Professor of Inherited Cardiovascular Disease and Sports Cardiology at St George’s Hospital London and the Medical Director of the Virgin London Marathon. Professor Sharma makes no charge for supervising the CRY screening programme and due to this support, CRY is able to subsidise the programme so that each appointment only costs £35. Privately these tests could cost in excess of £100, just for the ECG and consultation.